Waking every hour for weeks...

I haven’t had refreshing sleep in 14 years ...since the beginning. I have been on many things in order to feel somwhat refreshed but nothing I take achieves that.
My sleep again has recently taken a turn for the worse and I am waking almost every hour which means no nonRem sleep at all. I have been back on Lunesta for almost 10months due to being desperate.

I have tried just about every prescription sleep med there is...nothing has ever given me even a hint of feeling refreshed even though I sleep .

So my doctor gave me Trazodone 50mg to try. After reading horror stories I took it anyway and yes became a horror story too....I took it at 8pm....I felt nothing until I got up an hour later to get some water and was very very drowsy....laid there till 9:30 and had to take half Ativan because I was becoming anxious I wasn’t falling asleep. Finally at 10:00 I resorted to Lunesta 2mg and still no sleep.

Finally around 11 I fell asleep but started the awaking at 12:20 and they continued all night.

My question is for anyone who takes Trazodone....did it take a while to work....do you have to add another medication in order to sleep..? I actually also took 1 mg melatonin sublingual.

I am once again thinking of trying strictly herbal stuff again so if anyone has suggestions on those it would be very helpful.
I am getting to the place where if I don’t at least sleep a few hours contiously I will lose my mind...

Hi, @soxfan
I am sorry you are having such terrible difficulties with sleep. It does cause so much misery and makes all other symptoms worse, including anxiety, pain and discomforts.

I know nothing about most of your questions, but I have recently been taking Magnesium Taurate, at night, which seems to be helping me a little. I also , at another time during the night, separately, take L-theonine capsules, and also Lysine capsules, and sometimes Taurine capsules.

I try to tell myself that resting is okay, (not as good as refreshing sleep of course, but much better than not resting!)
and I try not to stress myself extra, over my sleep problem, often finding something else to think about while I am resting, such as purposefully silently repeating a mantra, or any pleasing relaxing thought or statement or image , or listing things I like, or even singing silently a calm repetitive song to myself. Anything that could interrupt or divert or keep me from stressing.
If I get anxious, I just try to refocus on something I decided on, ahead of time. I also try to make my sleep space as comfortable as possible.
I hope you find something that helps you , without creating some other problem.

I hardly dare to answer your post, when I fell ill I found a therapist ( not a doctor) who gave me supplements to calm down the glutamate route. As far as I understood it, there is a balance between GABA and glutamate. This gets disrupted.

most sleepmeds are working on the gabareceptors.

I did ( and do) sups like glycine to calm down the glutamate part plus natural GABA to make the gaba-part stronger to help me sleep. Very slowly it started to go better. Now that i started to take B12 I've made a big steps forward in sleeping.

another thing is that you might have sleep-apnea, this can be tested in a sleeplab.

Hope you'll find some relief soon, it's the worst thing not being able to sleep

I have used it in the beginning, but very soon I needed more and then found that the muscletension became higher because of it. Thereby making falling asleep again imposible.

Some time ago I mentioned this to a lady with ME who has used it for long time, in relatively high dose, on advise of her doc ( she has delayed sleeping syndrome). She stopped it on advice of her doctor and found she had less pain in her heart ( she has cardio problems too and is on meds for that)

I think it sort of dysregulates the GABA system even further. Fine product for jetlags, but I do not like it in the long run. But I know many people use it regularly and swear by it.

I hardly dare to answer your post, when I fell ill I found a therapist ( not a doctor) who gave me supplements to calm down the glutamate route. As far as I understood it, there is a balance between GABA and glutamate. This gets disrupted.

most sleepmeds are working on the gabareceptors.

I did ( and do) sups like glycine to calm down the glutamate part plus natural GABA to make the gaba-part stronger to help me sleep. Very slowly it started to go better. Now that i started to take B12 I've made a big steps forward in sleeping.

another thing is that you might have sleep-apnea, this can be tested in a sleeplab.

Hope you'll find some relief soon, it's the worst thing not being able to sleep

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Thanks....I am actually still hungover from the 50 mg Trazodone and it’s been over 18 hours. I am seeing my functional medicine doctor on Friday so I think I will ask her what supplements she would suggest. I don’t want to spend a bunch of money on stuff that might not help.

I already take Magnesium and B12. I was taking GABA but read someplace it is useless because it doesn’t cross the brain?

I just can’t handle what these prescriptions are doing to my brain. I feel spacy and bizarre. I just want to go to bed and back to my normal tiredness...

Did you try LDN? LDN helped me with sleep. Before LDN I slept few hours total per week. I tried everything else, including Lunesta, Trazodone and all other medications with no relief. After few weeks on LDN I started to sleep better. I also take taurine, inositol, glycine and magnesium before sleep and I'm much more relaxed. I had ”racing heart” feeling after Trazodone 25 mg, it felt like panic attack.

Thanks....I am actually still hungover from the 50 mg Trazodone and it’s been over 18 hours. I am seeing my functional medicine doctor on Friday so I think I will ask her what supplements she would suggest. I don’t want to spend a bunch of money on stuff that might not help.

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yes, take it up with your functional medicine doctor, that's better than trying to riddle it out by yourself, I had help too at that time.

LDN is good advice too, I use an enzyme which work likewise but softer .

Did you try LDN? LDN helped me with sleep. Before LDN I slept few hours total per week. I tried everything else, including Lunesta, Trazodone and all other medications with no relief. After few weeks on LDN I started to sleep better. I also take taurine, inositol, glycine and magnesium before sleep and I'm much more relaxed. I had ”racing heart” feeling after Trazodone 25 mg, it felt like panic attack.

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I have not tried LDN and am not sure I probably be able to find a doctor who will prescribe it. My PCP definitely wouldn’t but not sure about the functional med doctor. I have all those supplements listed to ask my doc about! I have been doing tons of reading on herbal etc.
Trazodone made me feel drunk...drugged...hungover...spacey and weird...horrible nightmare it was taking even that one dose.
I just feel any of the sleep drugs I am on now are really messing up my brain..especially the Lunesta when I take it but wake up all night. That does a number on me. Thanks for your suggestions!!!

I can't really tolerate trazodone either. The most I was able to tolerate was 10 mg, I had to cut the tablet, but that still left me tired and spacey the next day, I hated it and never could have taken 50 mg at once. Doctors in general know very little about sleep so I don't look to them for answers any more. If you have a functional medicine doctor, you may be in luck, hopefully they will know a bit more.

You should ask your functional medicine doctor about an adrenal stress index test which will check your cortisol levels during the day and evening. If your cortisol is high at night, it will severely affect your sleep and almost nothing will be able to help you until you get your levels normalized. Serisphos was very effective for this with me many years ago.

Also I had a hair analysis done recently which showed that my calcium/magnesium ratio was very badly skewed in favor of calcium, so I stopped my calcium supplement, increased my magnesium and started taking it (the magnesium) before bed and in the middle of the night, and that helped a lot.

These things have all helped me sleep:

5-htp before bed - don't take if you are already taking an SSRI as you may develop serotonin syndromdome

niacin (the kind that makes you flush) before bed, more middle of the night - it sensitizes or stimulates GABA receptors

l-theanine - helps the brain produce GABA, l-theanine may cross the blood-brain barrier, and more middle of the night

@Mary ....I did have a blood cortisol a few months ago which was very low for AM. When my endocrinologist wouldn’t give me something I looked for another doctor and found the functional medicine. She agrees that my cortisol is too low at 8am and believes that is part of my waking unrefreshed.

I am not sure she will do a saliva cortisol to find out what going on the rest of the day. She would if I asked....she has me taking Ashwagandha in the mornings but I don’t feel any difference.

Yeah the Trazodone experiment was a nightmare ....it lasted the entire day. Last night I went back to Lunesta and at least slept soundly although I still wake not feeling rested at all.

How much 5Htp do you take? That’s one of the things I was definitely going to buy. I have a list of all the stuff I researched to ask her about.
Thanks so much for your list...it is helpful to get all these ideas because I feel as though I have to get off the prescriptions....

I took Seriphos years ago after a saliva cortisol and my level at 10pm was too high. Not sure now if it’s too high at night...seeing the doc Friday and will ask for the test.

I have tried some benzo's in the beginning ( after 5 nights totally without sleep) but reacted badly on it. For months I used a benzo once in the three days. I hardly had any sleep from them and made me befuddled and feeling more ill.

I take 5HTP too, i'm lowering dosage at the moment, but have long been on a regimen of
150 mg 5HTP before bed and 100 middle of night
300 mg GABA before bed and 300 middle of night

I've tried GABA before and get a strange reaction. Just taking 200mg of PharmaGaba I get a sort of "head rush", a minor tightness in my chest, and my face turns red. It lasts for only a couple of minutes, but it's the opposite of the calming effect I was expecting.

I have tried some benzo's in the beginning ( after 5 nights totally without sleep) but reacted badly on it. For months I used a benzo once in the three days. I hardly had any sleep from them and made me befuddled and feeling more ill.

I take 5HTP too, i'm lowering dosage at the moment, but have long been on a regimen of
150 mg 5HTP before bed and 100 middle of night
300 mg GABA before bed and 300 middle of night

I have not tried LDN and am not sure I probably be able to find a doctor who will prescribe it. My PCP definitely wouldn’t but not sure about the functional med doctor. I have all those supplements listed to ask my doc about! I have been doing tons of reading on herbal etc.

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The functional med doctor prescribes me LDN. It's not a miracle but helps. But it takes time and patience with it.
Herbs never helped me with sleep and anxiety but amino acids taurine and glycine and inositol are very helpful. 5HTP was useless. Truth is everybody is different and only trying staff will tell you what works for you and what doesn't.
Good luck.

@soxfan - I take 200 mg of 5-htp before bed and no more in the middle of the night. I took 150 mg for many years and just increased it to 200 a few months ago. It did give me a mild headache for about a week when I first started it, but I kept taking it because it helped with sleep and then the headache stopped after a week.

That would be very good if you can get the saliva adrenal test done, so you know what your cortisol levels are at night. For me, it was best to take the Seriphos in the morning though my levels were high at night - I read it had something to do with the circadian rhythm. But since your cortisol is low in the morning, it is important to know what your levels are at night before taking something Seriphos.

You might ask your doctor about licorice - it's supposed to be pretty effective at raising cortisol. You could also ask others on the board what they do for low morning cortisol. Low morning cortisol can make you very tired, and the ashwaganda just might not be effective enough.

One more thing - finding out (by hair analysis) that my calcium was way too high in relation to my magnesium made a huge difference for me. I wish I had known this years ago. I had been taking calcium and magnesium in what I'd been told were the proper ratio, 2:1 calcium to magnesium and sometimes even more magnesium. But I'm beginning to think that like with potassium, people with ME/CFS have difficulty getting enough magnesium into the cells. When I cut out my calcium and then increased my magnesium and started taking it before bed and middle of the night, my sleep improved immediately. It was amazing. My former doctor (he died a few years ago) used to do a hair analysis once a year but he never saw this ratio, he only looked at levels of various minerals. Anyways, I ordered the test on-line here: https://hairanalysisreport.com/order-hair-analysis/

I ordered the TEI profile 2 (it uses Trace Elements lab, the same one my doctor used), and the profile 2 provided me with a written report from Trace Elements, as well as the test results, plus a one-hour phone consult with Alan Ashby at the Hair Analysis Report company. It was absolutely worth the $135 I paid.

@Mary .... I did ask on the adrenal board but not much response. I am pretty sure my functional medicine doctor will test whatever I ask for. She doesn’t take insurance and we pay for all testing.

I am beginning to think Klonopin has fried my brain. I had been taking it at bedtime since 2012 half milligram. It worked for a long time...until last summer. I really don’t like taking Lunesta but if I didn’t I would never fall asleep. I feel so wired at night.

I agree Ashwagandha is not going to do the trick...I think I am too rough shape and it has gone on too long. I might need a prescription. She agreed that Ashwagandha might not be enough.

I deal with total unrefreshing sleep no matter what I take so that’s the reason I want to go the herbal route. I am ungodly tired everymorning. I always pray I will wake up and feel good but....

I will let you know on Friday what she recommends and if she will agree to the saliva cortisol.

Thanks again for all your information and support!

I have to add that way back in the 80s after graduating college I got a job in a hair analysis lab..it was so interesting and a very new concept. We all use to get our hair tested a couple times a year...when the report printed it would also print supplement recommendations based on the result! It was a very interesting job.

Hi @soxfan - I was on 1 mg. of lorazepam for 10 years for sleep (took it in the middle of the night - I started at 0.5 mg and then went up to 1 after a few years). I got totally off of it a year ago last February and had quite a rough time. The supplements I mentioned above all helped me with sleep. Most herbs didn't do much. The things I've found to be most effective are amino acids (the ones I listed) and magnesium. I never tried Lunesta or ambien or anything like that - they don't get to the root of the problem. You might be surprised at what something like magnesium can do if balanced properly with calcium and taken at night.

A couple of other things that helped when I was dealing with post-lorazepam insomnia were resveratrol, calcium pyruvate and high dose vitamin C, all of which are glutamate scavengers.

And I still recommend the niacin and l-theanine too, which help promote GABA.

It's great you have a doctor to work with - they are so rare. Though too bad you have to pay out of pocket for it all! It's not fair - but that's the way it is.

@soxfan A few thoughts come to mind here as I've struggled with sleep as well. Many women with ME/CFS are short of amino acids, see attached. My pattern of low amino matched the research, even though I was already eating 100g of protein a day, it wasn't enough.

Supplementing them helped me sleep much better. Ornithine, citrulline, GABA, glycine, taurine, and theanine all help sleep.. In my case, my doctor added ornithine last and co immediately slept through the night.

Other things that have helped are having adequate progesterone, as well as melatonin, LDN, magnesium glycinate, calcium, and phosphatidyl serine.

As long as you're paying for testing, a DUTCH test and a Genova Diagnostics NutrEval may help you.

I found I have problems with not enough nitric oxide and too much ONOO, which has been found in ME/CFS patients. The ornithine and citrulline help counteract low NO. Ask your functional medicine doc about this.

Which benzos do you like sundancer? ativan is the only one i tried and its good.

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I don't remember their names, I felt awfully bad with them and it did not give me much sleep either. I felt bad until about four o'clock in the midday as payment for 2 hours of sleep.
I'm glad I went the way of natural supplementation, but indeed, that is a very personal thing, everybody seems to need a different combi of supplements.